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Coeliac Disease: What To Do

An autoimmune condition in which gluten damages the lining of the small intestine.

Last revised

It is substantially underdiagnosed, and removing gluten before testing makes the diagnosis much harder to establish.

Key takeaways

  • Trigger: gluten, found in wheat, barley and rye
  • Testing: blood tests, then usually an endoscopy with biopsy
  • Most useful single change: Ask for testing before removing gluten from your diet.
  • Commonest mistake: Going gluten-free before testing, which invalidates the results.
  • See a doctor if any of the signs under "When to get help" below apply to you.

Do

  • Ask for testing before removing gluten from your diet
  • Keep eating gluten in more than one meal a day until tests are done
  • Ask for dietitian referral after diagnosis
  • Check first-degree relatives, who are at higher risk

Do not

  • Going gluten-free before testing, which invalidates the results
  • Assuming "may contain" products are safe
  • Ordinary oats, which are cross-contaminated in milling

The figures behind the list

Each item above follows from these, published in the guidance named at the foot of the page.

Published figures for Coeliac Disease
MeasureFigure
Triggergluten, found in wheat, barley and rye
Testingblood tests, then usually an endoscopy with biopsy
Crucialkeep eating gluten until testing is complete
Treatmenta strict lifelong gluten-free diet
Oatsneed to be certified gluten-free; a minority react to oats themselves

Where to go next

When to get help

See a GP for persistent diarrhoea, bloating, unexplained weight loss, mouth ulcers, fatigue or iron deficiency anaemia. Do not remove gluten before testing. Seek urgent assessment for severe abdominal pain, persistent vomiting or blood in the stool.

Where this comes from

  • NICE — Coeliac disease: recognition, assessment and management
  • Coeliac UK — getting diagnosed

How this page was put together

Every figure, recommendation and warning above is taken from the guidance named in Where this comes from. Nothing on this page is inferred, summarised or generalised beyond what those bodies publish: where they give a number, it is their number, and where they are silent, so are we. Pages are rebuilt whenever the underlying record changes. Sign-off by a named clinician, where it has happened, is shown at the top of the page along with the date.

Medical disclaimer

This article is general information, not medical advice. It cannot account for your own history, medication or circumstances. Always speak to a GP, pharmacist or another qualified health professional before making changes that affect your treatment, and never delay seeking medical advice because of something you have read here. In an emergency, call 999.

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